Wednesday, September 30, 2009

Mommy slept great last night but she was also starting to slow some flu symptoms. But poor Daddy couldn't even make it out of bed this morning so she was off to UCD on her own.

When Mommy left last night, I was doing so much better that the news this morning came as a shock. Just 1/2 hour before she showed up, the doctors had to do an emergency trach change when I went into respiratory distress after developing a plug. Basically, a plug is just secretions that are too thick and block off the bottom of the trach so I can no longer breathe through it. The nurse said that she was trying to change my diaper and I became very agitated and my numbers started to drop. She tried to suction me but couldn't pass the catheter through my trach. She started bagging me and they got the ENT in quickly to change out the trach. Immediately, my numbers jumped back up and I fell asleep. Not only was Mommy surprised by the quick change of events but so were the doctors so they did another chest xray. When they showed up a few minutes after Mommy arrived they let her know that based on the current xray they actually don't think I have pneumonia at all. In fact, the cloudiness in my lungs is more consistent with the run of the mill viral URI I have experienced in the past. Mommy was actually a little relieved to hear that but still concerned about the plug I developed. It made more sense later in the day when she realized that my trach mist heater wasn't working (that's right, it hasn't been working at home for the last week either). Apparently there was a problem with the bottle of water and it would work for a few minutes and then stop. Mommy had noticed several times yesterday and had the respiratory therapist fix it but she's pretty sure that it probably wasn't working all night. In addition, without Mommy sitting next to me all night suctioning like she did during the day, she's guessing the the two events combined resulted in a plug that couldn't be suctioned and I couldn't cough up on my own.

After the initial excitement the rest of the day went well. I started working back up to my full feedings and my fever was finally beat. We watched lots of videos today and also spent lots of time coloring and playing with stickers. Mommy pointed out my flowers through the window and every time she asked where the flowers were Daddy had sent me I would point them out to her. The doctors let Mommy know later in the afternoon that the first test had come back negative for swine flu but there was a second test that would take longer. Until that came back I would have to remain in isolation. The doctors also decided just to be on the safe side they should get some blood work. As in the past, it wasn't a quick process. We went through three different nurses before we finally found one who could get a vein. When my parents say I am a hard stick they aren't kidding as these nurses are finding out!

After another 12 hour "shift" Mommy was ready to head home for some rest. She got me lying down like she did last night and a nurse ready to rub my back and then she was home to Daddy and my brothers. Another day over in the PICU!

Around 3 am, we finally got moved out of the ER and into our own room - and what a room it was! Because of my flu like symptoms I got to do something I've never done before - I was put in isolation! Basically that means I get a private room (not so bad, right?) but before anyone can come in my room they have to wear gloves, gowns and masks - Mommy and Daddy included. To be transported from the ER to my room I even had to wear a mask (it may look cute on me but I hated it!)

After getting into my room they took a few swabs from my nose (not pretty) to test for swine flu. By that time, Daddy was starting to feel a little under the weather. He needed to open the office for the day so Mommy sent him home to check on my grandparents and the dogs and get showered to go to work (that's right on absolutely no sleep). Mommy got to stay and keep me entertained. I did doze off an on but it was a long night and she didn't get any sleep either.

In the morning the doctors came by and said they thought I had both bacterial and viral pneumonia and they were going to start me on antibiotics for the bacterial pneumonia and Tamiflu in case it was the flu. I started out on some Pedialite but by mid-morning they decided to switch me to a soy formula I haven't tried before since they don't carry the brand I use. About that time, Grandpa Mower showed up just in time to see me vomit it all up on Mommy. He poked his head in the door and let her know Daddy had sent him with some items (my DVD player and movies, Mommy's contacts and the camera) and then he left to start the long drive back to Salt Lake.

Meanwhile, back at the office, Daddy was feeling worse and worse. As if going to work wasn't bad enough he had to report for jury duty at 1 pm. Luckily when he called and explained the situation they gladly let him off and he went home to sleep.

After my soy formula blow out Mommy tried out just some sterile water with my Miralax but I was still running a fever and that came right back up as well. By now the pj's I had worn to the ER and my lovey had to be put aside and I got into the standard issue hospital gown. Good thing Mommy had thought to bring my "big lovie" (no, not the polygamy show Big Love) and that took over for my regular lovie until she could be washed. With the vomiting and fever you would think they would leave me alone for a while but I needed fluids to help the fever go down and keep my secretions thin so the time came to try to get an IV in again. After the ER experience, they took Mommy seriously and brought out the big guns - Darrell from the transport team. My parents learned several IV's ago that the folks on the transport team or the NICU are the way to go when it comes to IV's since they are used to working with babies in emergency situations. Darrell took his time checking out the options and on the first stick he got it in. Mommy was thrilled! With the IV in and fluids flowing and a dose of Tylenol I was feeling better within a few hours and the nurses started me on a V-E-R-Y slow soy formula feeding and I kept it down. The DVD player came in handy and kept me entertained and quiet on Mommy's lap. Early on, Mommy decided it was just easier to climb into the crib with me and thank goodness she fit!

By 6 pm, I was starting to wind down and Mommy was about ready to collapse. She had been taking care of me at the hospital for 12 hours straight with only one five minute potty break. Daddy had taken the car, so he came to get her and brought me my other lovie, my stuffed Barney and a big arrangement of flowers. Mommy got me lying down and then had the nurse come in and rub my back so she could leave. Since Daddy was sick he wasn't able to come see me but Mommy brought me all the items (the flowers had to stay outside the room) and I was asleep before she left the hospital. Good thing, because both my parents need their rest tonight too.

All looks normal in this picture right? Unless you look really closely you may not notice that my top and bottom do not match - a sure sign that something was not quite what it should be. Sure enough, when Mommy came walking out this morning she could hear me coughing and coughing and coughing. She knew it was going to be a long day. Sure enough, I had spent all night coughing and was starting to run a fever - upper respiratory infection here I come!

So it went pretty much like it always does, first comes the cough, then comes the fever, then my heart rate increases and oxygen saturation decreases and then the vomiting begins. Yep, that's pretty much what happened this time too! By dinner time although the coughing had mostly subsided I was still running a fever with all the Tylenol I could take and I was working hard to breathe. My parents had tried to avoid the ER but finally decided they didn't want to take any more chances and off to UCD we went.

We didn't have to wait long to get into a room - a trach baby with flu symptoms sends up lots of red flags! We quickly got a chest xray and then the waiting began. The docs were thinking pneumonia and I would need to be admitted but it took about 6 hours to finally end up in a room. Meanwhile, I dozed off and on in Mommy's lap. Mid-way through the marathon, they got some blood from me but before they could hook the up the IV it was blown. Rather then continue to stick me, they decided to wait until I got up into a room to have someone else try to find a good vein. Stay tuned....

With 105 degrees plus today, Mommy, Grandma and I headed to Elk Grove park to feed the ducks pretty early before it got unbearable. Even the ducks seemed a little put off by the heat and we didn't get nearly the amount of excitement about the crackers that we normally do.

For dinner, we met Uncle Jeff at BJ's. We had to wait a little while but I did really well sitting in Mommy's lap at the table. I kept myself busy eating some crackers and drinking some of Daddy's soda. Unfortunately, I got on a sneezing and coughing fit and poor Uncle Jeff and all the close sitting tables looked a little worried. They probably should have been because after going down for the night, I started having some serious coughing fits - never a good sign. Good thing my night nurse showed up on time so my parents could get some sleep - they wil probably need it!

I got a big surprise this afternoon! Not only did I have my sign language teacher, Kirsten show up to play but in walked Grandma and Grandpa Mower, too. All the way from Salt Lake! Mommy knew all about it but she kept it a secret and boy was I surprised.

I had a lot of fun showing off to my grandparents and as you can see it didn't take me long to end up in my grandma's lap. How could I not when they showed up with lots of gifts - I got an Elmo Halloween candy basket, an Elmo medical kit and an Elmo piano book (are you sensing a theme?) I loved my new Elmo piano book but only wanted to play the same song over and over and over again.

We all had a great dinner together and I did some more showing off in front of my mirror and dancing barre and finally I went down for the night. My night nurse was supposed to show up at 10 pm. When Mommy hadn't seen her by 10:30 she called the agency. When they tracked the nurse down she realized she had gotten all messed up on what night it was - and was headed to another family where she normally started at 11 pm. She turned around and came back to Elk Grove and Mommy was finally able to go to bed!

Friday, September 25, 2009

The hot weather continues so that means spending time indoors playing and trying to keep me entertained. We had a visitor from the nursing agency today which gave me someone new to show off too. While she was trying to talk to Mommy and Lucille I kept interrupting her to demonstrate my dance moves. Hey - everyone is an audience right?

Thursday, September 24, 2009

After a 2 1/2 hour drive into Palo Alto today and an hour in the waiting area we finally got into a room for my preop appointment for surgery next month with Dr Schendel. First we had to get through several student doctors (One had a straight face when asking "has Peyton ever had any other surgeries?" as if the obvious hole in my neck wouldn't have answered the question) before he came in and reviewed the CT scan I had done at UC Davis back in August. Drum roll please..... I will be having a standard jaw distraction for length on October 6th. In addition, Dr Schendel will attempt to "loosen" my left TM joint and take skin and fat from my groin to help fix my right TM joint. While I am under anesthesia for all of that, he is going to excise the scar from the previous jaw distraction that is on my left cheek and do a scope of my airway to see how things look there. We can plan on 3-4 days in the hospital and then the fun of pin turning begins again! Mommy stressed to Dr Schendel the serious issues with pain managment last time around and he assured her that I can get stronger meds now that I am bigger. After I am all healed from the surgery then he'll take another look at the width of my mouth opening to decide if he wants to do further surgery on my joints. So now it's just a waiting game and trying to keep me healthy for surgery.

Two very different faces, right? As Mommy has said all along, I am just an actress waiting to be discovered.

Today I got to show off a little when I went for a follow up evaluation at the Baby Steps program at the UC Davis MIND Institute. They like to follow graduates of the NICU to see how they are doing. Of course, I am doing really well if you ask me. I sat in my own big girl chair and got to "play" for about an hour and a half - doing things like stacking blocks, putting pieces in a puzzle, pointing at pictures in a book. After that point, I started to get a little antsy and stopped wanting to respond to instructions (I started tuning them out and doing my own thing). Thankfully about that time they let me down to show off how I can run, jump and climb stairs. Finally, the doctor came in to do a quick exam. She found a little cafe au lait spot on my tummy. One is not a big deal but if there were five or so, that could be an indicator of a scary syndrome (you might know it as the Elephant Man disease). So my parents will keep an eye on that. It will be about a month before my parents get the written results back but in general I did very well - mostly right around age level. Because of my refusal to do some things Mommy knows I can (like walk backwards, sign lots of words, etc) and some terminology that I was not familiar with (tummy instead of belly, etc) I scored lower then probably where I really am but Mommy was still happy with my results. I was happy because I got a brand new book, "Sheep in a Jeep". They'll want to see me again in 9 months and I'll get another book then too.

In the afternoon I got to show Karen, my OT the dance barre which she thought was great. We got to do some fun stuff like learn to cut with special scissors (I say "fun", Mommy says "scary") and tear and crumple paper. She always has such fun things for us to do together!

Monday, September 21, 2009

Tickle Me Elmo was great, but I'm an even bigger fan of Silly Parts Talking Elmo! Mommy was going through some boxes she hadn't seen since her move to Sacramento and what did she find but Elmo who dresses up like an elephant, a chicken a pig or even Mr. Noodle! It's Mr. Potato Head except it's Elmo! As you can see I was in love instantly!

The smile says it all! I didn't even make it out of my jammies before trying out my new dance barre. With Mommy showing me some moves and a little Ballet On Demand I was set! It wasn't long before I was throwing my leg up on the barre and "stretching"!

In addition to being great for dancing, my mirror is also fun for trying out my talking. You can hear me learning how to say "Uh-Oh" and "Daddy". I am my own biggest fan, so let's be honest, what could be better than a mirror?

Saturday, September 19, 2009

Despite falling asleep so late last night, I was up right on time at 6 am. The nurse let Mommy know that the heater for my trach mist machine is no longer working so as soon as it was a decent hour Mommy called the DME company to see about a replacement. Unfortunately, they don't have anything in stock so it may be a week or more before they can bring a new one out. Meanwhile, I will have to get use to a "cool" mist at night.

It's been a while since my parents had Lucille on the weekend so they took advantage of it by having lunch together, napping and running some errands. One of the errands was a Home Depot run so Daddy could keep his promise to make me a dancing barre. I was just falling asleep tonight as Daddy finished working on it so my parents can't wait to see what I think when I catch sight of it in the morning.

I went down for a late nap today - I was having too much fun playing in my crib to actually sleep. So when I finally woke up around 4:30, Mommy had a bad feeling about how my night might go. Uncle Jeff came over for dinner around 6 pm and I was perfectly content to sit in my high chair and drink a little Pepsi (little was about 2 cc's). Then while Daddy and Uncle Jeff were finishing up, Mommy turned on 'Yo Gabba Gabba' for me. (If you're not familiar with the show you should check it out at http://www.yogabbagabba.com/)

Yo Gabba Gabba was discovered in the Smith home after my parents saw it being made fun of on a show called The Soup that likes to make fun of other shows on TV. It is a very strange children's show with a man in an ugly orange outfit and five alien like creatures the come to life out of his boom box. One of the segments shows little kids dancing and they say, "My name is XXXX, I like to dance." For months now, my parents will say, "My name is Peyton, I like to dance" and I'll start dancing. It was just a little joke but Mommy stumbled across the show On-Demand the other morning and decided to see what I thought. To her surprise I wasn't terrified - I was fascinated! Now it is a morning staple and Lucille wasn't sure quite what to think. Now it was Uncle Jeff's turn to be introduced and he was similarly horrified!

After the fun of Yo Gabba Gabba I was raring to go and played hard with Jeff all night. My parents finally put me down to sleep at 8:30 but by 10:00 I was still awake and crying because I wanted out of my crib. Now was I awake because a)Yo Gabba Gabba b)Uncle Jeff or c)Pepsi? Hard to say at this point but a few minutes after my parents left me with my nurse, Carol I finally fell asleep.

What a nice surprise I received today! I got a cute Peyton-size apron and a I Love NY t-shirt! (Thanks so much Rhonda!!!!) Mommy thought the apron would be a big hit but when she slipped it on me I started crying (ok make that sobbing). So then Mommy tried it on to show me how fun it was and I still wanted nothing to do with it. Then Daddy came home and put it on but still no luck. Finally, my parents put it on Chili. I thought it was pretty funny that Chili was wearing an apron but I still wanted nothing to do with it! That apron would have come in handy earlier in the day when I decided to do a little "painting" with my pudding.

Wednesday, September 16, 2009

Here I am checking out the Summer 2009 CCA newsletter with Daddy. I've yet to make an appearance in the newsletter so for now I am content to read about all the other great kids that are part of CCA.

Although I didn't do a lot of eating today in my feeding therapy appointment, I did wear my speaking valve the entire time without any problems. Towards the end, Karen and Mommy and I worked on my speaking and after a few tries "uh-oh" came through loud and clear!

Tuesday, September 15, 2009

Can you see something wrong in the picture - I can! There have been a lot of jokes recently about how I am OCD like my Mommy. But despite all of Mommy's denials, the case of the shoe boxes has emerged and now she is not so sure that I fall far from her tree. My parents had the great idea to take all my empty shoe boxes, tape the lids on them and then I could use them as building blocks. They are a good size for building without being too heavy and I love them. However, Daddy noticed pretty early on that when either he or Mommy stacked a box upside down that I would take a moment to turn it right side up. So Daddy tested out the theory. He would have Mommy stack a few boxes right side up, then one right side down and then a few more right side up. Sure enough, I would take the two boxes off the top that were right side up and remove them, then turn over the one that was upside down and then restack the two top boxes again. My parents have tried this party trick out on me many times since then and each time it is the same result - I have to turn the boxes upside down to be right side up. Now, I am not sure if you call that being OCD or paying attention to solid engineering practices but it is important to me so my parents just need to get over it!

Sunday, September 13, 2009

My parents made the profound mistake of letting me "look" on the toy aisles today at Target and big shocker - I found something (okay lots of things) that I wanted. Instead of the $50 tricycle my parents settled on the $3 baby doll. It's hard to tell from the pictures but I am not biting my baby's face or foot off - I am actually licking water off of her. I was feeding her water from my baby bottle and it got a little out of control!

Saturday, September 12, 2009

After much anticipation it was finally the day for the CCA picnic. CCA is Children's Craniofacial Association which is a wonderful organization that provides education and support to children and their families who like me have a craniofacial syndromes. Please check them out at ccakids.com! September is Craniofacial Acceptance month and CCA had families sponsor picnics in their communities. The CCA picnic closest to us was in Los Gatos which is 2+ hours away. Although it was a long drive, it was well worth it. We went to a great park and met six other children and their families. One little girl has a facial cleft, a 2 year old boy has craniosynostosis and a 2 1/2 year old girl has Treacher Collins Syndrome. The biggest surprise, though, was when I got to meet a girl in the second grade named Casey who has Nager syndrome just like me! I was officially the only child at the picnic with a trach although at least two of the children had a trach at some point. But you should have seen all the Mic-KEY buttons! Our picnic was hosted by Courtney and her son Seth - thanks guys for inviting us!

We started out the picnic with all the kids riding on a small steam engine. It was my first time on a train and it was so much fun! Then Mommy took me on my first carousel ride. Despite the expression on my face, I loved it! In fact, as soon as the ride stopped I started signing "more". The group headed back to the picnic area and I got some play time on the slide and swing. Later, Mommy and I talked to Casey for a little while. She is also a patient of Dr Schendel's and will be having similar surgery as I will soon as well. Casey was fascinated with my trach and kept touching it but I didn't mind at all. She just had her trach taken out about a year ago. She showed me her button and I showed her mine. She also had the same surgery done on her right hand as I did so we compared our hands since they looked exactly the same - three fingers and a thumb! She showed us her BAHA's that were implanted behind her ears and then told us about all 9 of her surgeries - she's been a busy girl. She had to leave to go to a swim lesson (yes she is swimming now that she doesn't have a trach) and we had a long drive back home. Mommy sure wishes we lived closer to everyone because in the short time she got to talk to the other parents it was clear that we all have a lot in common, but she will try to get email addresses so we can stay in contact.